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Chronic Pain members - Welcome, please introduce yourself
Welcome to the new Chronic Pain group.
I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Why not take a minute and introduce yourself.
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I’ve had to learn all of the things in this list the hard way especially the last one.
@faithwalker007 Renee, I have had to be my own advocate since 1988 when I went through a long diagnosis period for systemic lupus. The one dr told me it was "all in your head"!
While your list is great, and is a wonderful resource for everyone, I must add on that not everyone will feel comfortable approaching their medical teams with facts and factual information, ready to self-advocate. Some people may want or need a cohort to stand by them and back them up. Enlist that person now, if possible! And be prepared for a less-than-positive response from your medical team. They aren't used to patients standing up to them and demanding good treatment. I've been there, done that.
Ginger
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3 Reactions@faithwalker007
I can't get my new laptop to recognize Internet sources, so until I get that fixed I can't print online things. Our daughter and family are coming for Thanksgiving, and I hope her husband will be able to help me. He's an IT with the Coast Guard. I should be able to print wirelessly from my phone, and did it easily with my old pixel 2, but I haven't been able to get the printer to connect with my new LG. I guess I need to just play with it until I get it set up.
Thank you for your suggestions. I'm going to start putting together in a notebook the things you listed.
Are you doing better than you were a few days ago? I miss the days when life was on an even keel, before I climbed onto the roller coaster. You were in a ton of pain and were mostly in bed when you showed us the picture of your beautiful dog, if I remember correctly.
Jim
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2 Reactions@faithwalker007
Good job...........and important to know that the records and regulations do exist.
What kind of laptop do you have? Does it have a page for internet accounts? I just went through that issue. There is a young man in Dallas named Jeff who devoted three hours to help me so all my devices are "cohabitating" in the same internet world.
May you have peace and happiness today.
Chris
That is why I said at the beginning to tell your family and all those you trust around you. You need to know who believes you and those who don’t . Who is on your team and who isn’t. Who will stand by you and those who refuse to listen.
My advocate is my husband. He is with me at every appointment. He stands by my words, actions, and deeds. Holds me up and catches me when I’m crushed. I cry every disappointment on his shoulder, son every betrayal in his ear, and then do the same for him at this trials by fire—he’s disabled as well, remember?
I’m sorry you have been self-advocating for so long. It’s a chore and weakens a determined will only to steel the spine when necessary.
Nothing I say in this is guesswork or out of naivety. It is from experience either in healthcare as a pharmacist or personally from being the caregiver of a man who suffers from severe, agonizing pain every day of his life, or as a progressive CRPS type 2 patient who has no hope of remission and only 40% control and who struggles for any form of relief on a daily basis.
Life was never promised to be easy but we don’t need to live it alone. We do need to be wise and smart though and THAT is all I was saying.
Today’s healthcare isn’t the same as it was 10-20-30 years ago. To act like it is, is asking for you to fall victim to malpractice.
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4 ReactionsVery well said @faithwalker007 . It can also be of value to not say we feel a certain way rather we have observed such and such.
A little bit off subject but in regard to family members or friends or people in our lives that need to adjust their expectations of us, it can be beneficial to show them the list of your medical conditions and diseases and point out specifically which ones are painful in nature. If the people care about you and you care about your relationship with them, you could say that you felt you needed something from them and that was to understand your situation so that they can adjust their expectations and then show them the list. That way, you are almost put into the position to have to show them to make for the best relationship. You have not accused them of doing any thing wrong rather it is something you need from them and important to you because you value the relationship.
I had to do this with my daughters at separate times but was resentful because they put me in the position to have to validate myself. I spoke to this some time ago when one of my daughters said she had talked with the other and they had agreed they would take turns coming every other week or so to help me with things. When it never happened, the daughter who told me about it, alluded to the fact that the other had said that they wanted to be careful they did not enable me.
They knew about all my doctor appointments, Diagnostics, procedures, surgeries and illnesses for years so that should have been enough and that really hurt me and made me resentful.
It could be a very helpful thing to do what I did only before resentment builds.
Blessings, Sunnyflower
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2 ReactionsThe weather is still not cooperating. We haven’t had a nice clear day in 5 days. We’ve been at 95% or higher humidity and only 35-40 degree temperatures, much lower at night. It’s making my osteoarthritis in my knee, shoulders and hips flare as well as my CRPS. I’ve been spared a migraine so far. I’ll probably get nailed with one of those when the barometric pressure starts to rise and this crap moves out of here.
I’m trying to start a new book but I can’t concentrate on anything but the pain in my legs. Feels like they are being squeezed in a vice, at the same time someone is beating me with a baseball bat and I’m standing in a slushy, icy mountain lake.
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1 ReactionFamily is hard. My parents finally believe the pain I’m in but they are here in town. My brother still believes I am exaggerating and my son has lived with my husband’s pain and surgeries his whole life. He compares mine to his which are not the same. CRPS is worse but I gave up.
My other family ignores it and pretend I’m “fine.” They are not in the same state or region but I really wish they would try harder to understand and read about it because they could give mom and dad support.
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1 ReactionHi Ginger I could not pass up the opportunity to tell you what happened to me that you could relate to unfortunately.
I had intense groin pain and had to crawl up my stairs in my home for a month. I had a negative x-ray so my PCP sent me to ortho. By this time I could barely wait bear and was on crutches.
He ordered me an MRI and that as well as the X-ray came out negative. What he said to my husband and I when I went back even worse, to discuss the MRI results, was and I quote verbatim, " you know you're getting older, you are going to have pain, you need to take that pain put it in a box and store it in the back of your brain and the worst thing you can do is to stay off your leg."
It took us a few minutes to pick our Jaws up off the floor but we did and went home. There was a voicemail waiting for us and it was my PCP who said she wanted me to go over and get a bone scan which I did.
Usually you wait and a tech will come out and say thank you, you may go home now and someone will get back to you. This time it was the radiologist and he told me I had two broken pelvic bones and to stay off my foot!
So they will take me out in a wheelchair and ever since then I have wanted to write a note to this Ortho doctor saying something like, you know, I did not come to you for a psych eval. But I never did. Clearly he had second thoughts and called my PCP to see if I had had a bone scan.
Now here is the real clincher, after that over the years, I have had negative bone scans and a positive MRI which is in Reverse of what happened then. My PCP told me that a radiologist had told her that daily steroids can interfere with results so now if one diagnostic is negative they proceed with the other and vice versa. There is no Rhyme or Reason and it makes no sense. Now that I have a new PCP I will have to go over all that with that person and I know they usually don't believe me.
It is no pleasure and not fun being a Perpetual patient. But I know God has his purpose in it so I accept it but still advocate for myself. It has taken me so many years of learning so much to be able to do that and I really feel for the people who do not have that knowledge because they have not worked in healthcare and do not understand system errors and because they just do not have knowledge of what their rights are or how to advocate for themselves.
Take good care of yourself, Sunny flower. @gingerw. @faithwalker007
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4 ReactionsMy laptop is an elderly turtle in every way.